All posts for the month September, 2016

A few weeks ago, we went to the Saturday Farmers Market in Boston. Robert was not happy and he let us know that happy he wasn’t. He made loud noises. He kept pulling his father in any direction that would take him out of the crowd, beyond vegetable stalls, boxes of strawberries, and bags of onions. To demonstrate his distress he patted his ears in quick short movements. One might say, that his behavior was a typical reaction of a person with autism to an overstimulation by, among others, seemingly aimless swarm of people, noise, and crowded sidewalks. One might also ask, how could we, the parents, subject our son to such environment. Shouldn’t we know better?

Well, we did and we did not.

Years ago, we visited Farmers Market with both of our children quite a few times. They were not very pleased then either, but somehow they both were able to contain their displeasure to either a few well articulated words (Amanda) or to a few vague gestures (Robert). We didn’t expect anything worse than that. If anything we expected better behavior. After all, Robert grew up and learned a few things in the time that passed. So, the strong and loud negative reaction to the place startled us. We knew, we shouldn’t surrender to Robert’s will, but we didn’t want him to continue expressing his wishes in such inappropriate ways either. So after we bought a few dollars worth of fruit and vegetables – less than half of what we had previously intended – we decided to leave. For reasons I still don’t understand, Robert accepted all of our shopping with the exception of a small box of blueberries. He took them out of the bag and tried to return them to the stall. Well, we sort of argued. We used words. Robert used gestures and grunting noises. But reluctantly he gave up. He walked with us toward parked car still expressing his displeasure, but he calmed down in the car.

One might suggest that I should learn my lesson and never take Robert to such overstimulating places.

I did learn my lesson and that is why last Saturday, we took Robert to Farmers Market again. But:

We told him before leaving home that after walk around Pleasure Bay, we would go to Farmers Market. We repeated that a few times on the way to Boston and mentioned that during the walk.

We told him what we needed to buy. Blueberries! Every day Robert takes a small container of blueberries to his Day Program. I reminded him that we don’t have blueberries at home. I said we would buy a few more vegetables and fruit.

This Saturday, it was still noisy,crowded, and chaotic, but Robert was fine. No pulling, no protesting, no screaming and no patting his ears. The matter of fact, as soon as he recognize the place, he smiled. We bought blueberries and eggplant for Robert, grapes and strawberries for dad, cilantro, scallion, and radishes for me.

Two days ago, Robert and I started a new section of Horizon Reading to Learn. We are ready to leave the Earth for other planets in the Solar system. We are also ready to jump into the future. The year 2230 to be precise. After traveling all over the Earth with Herman the Fly, after many trips into the past and the future with Eric and Tom, after following Toby the Kangaroo from Australia to Canada and back, after learning from Linda and her sister Kathy how to survive on the desert island, after escaping with Carla ans Edna from make-believe island plagued by dinosaurs, earthquake and erupting volcano it was only natural that the next 10+ stories would take us into the future and other planets in our solar system.

We are still in the phase of getting ready. The first step for Wendy is to be accepted. Thus, we witness Wendy taking the exam that might qualify her for the special trip. We feel her anxiety, we soar with her through some of the questions, and we learn a few new facts from her answers. To make reading of the next section easier, we too prepare ourselves by recalling the name of the planets. To the concepts of “past” and “future” we have just added the most elusive one, “present”. (Before today, we used simpler term, but equally evasive, “now”. )

I had the impression that Robert felt pretty good when he read those questions on Wendy’s test to which he also knew the answers. Maybe this writer’s trick allowed Robert to compare his knowledge with the character in the story. Maybe Robert realized that he knows almost as much as does Wendy. So he too might qualify for the trip.

Robert and I continue to study almost every day but I write about teaching Robert much less than I did previously. I have doubts about practical aspects of the knowledge Robert is gaining. I have always had them. But as Robert is getting older those doubts multiply and diminish my belief that knowledge and understanding improve quality of life even when they do not translate into practical tools. Although I can still teach Robert, it is much harder to write about tangible effects of our daily sessions as they seem not to address severe deficits impeding Robert’s life.

Should we spend time on Roman Numerals when Robert still doesn’t know how to set a correct water temperature for his bath or his shower? Should we keep increasing his vocabulary to the fourth grade level when Robert’s ability to communicate is that of 4 years old child?

Just yesterday, I found some validation for our hours of learning and teaching. For the last two weeks, Robert and I spent an hour or more a day reading texts from Horizon Reading to Learn about a boy who, with the encouragement and support from his grandmother, invented a light saver. I was very tempted to skip the 10 or so rather difficult texts dealing with ” electric eyes, beams, counters, patents, patent attorneys, manufacturers, legal agreements and so on. I though that even explanation of how electric eye work and what happens when the beam is blocked were abstract enough to validate the decision to skip those texts. Still, I went on. Well, we went on. We found out that one electric eye would not do the trick when two people get into the room as the blocked beam would turn the life off. We found out that it is important for the device to recognize if the people come in or out of the room. We learned that the contraption has to count how many people entered and left the room to avoid leaving some of the people in the darkness. For a few days, Robert was reading the story and analyzing the drawings of the electric eyes and beams stretching across the doorway counting how many people entered and how many people exited the room. He used that information to decide if the lights in the room were on or off.

Although I was skeptical about the value of those difficult texts, Robert insisted on reading. So we read.

It was this morning, however, when our decision to continue reading and learning was vindicated. I asked Robert to turn off TV. He couldn’t. His fingers obstructed the beam going from the remote to the TV set. Many times before I had tried to change the position of his fingers, but it had never worked. Today, however, I showed Robert “the electric eye” in the remote and a little “eye” below the TV screen. I explained as well as Grandmother Esther would explain it to Leonard that he should aim the remote at the target on the TV set and keep his fingers from covering the “electric eye” in the front of remote. Robert got it!!! With some difficulties, he repositioned his fingers and turned the TV off.

I don’t know when this behavior appeared for the first time. Did it develop step by step or did the idea come to Robert suddenly in its complete form.

I know that it started with Robert hanging and folding laundry. He learned years ago how to do it and where everything belonged. That was great!. He also learned, at some point, to separate most of the white clothes from the dark ones. I said, “MOST”, because for reasons Robert doesn’t explain, he always puts one or two pairs of his dad’s black socks with the white load. Oh well!

A couple of months ago, I realized that Robert uses a special pattern to put DIRTY clothes in the hamper. He is not able to just drop them in and let them be crumpled and mixed up with other dirty clothes. All pieces of his and everybody’s else garments have to be stretched one on top of the other in the same order they were worn (or taken off) by members of our family. Robert places socks on the bottom, then go his pants followed by his underwear, his shirt and, if it is colder season, by his white undershirt. Robert’s pyjama and socks also follow a similar pattern. When other members of our family drop their clothes in the hamper, Robert is immediately arranging them according to the rules only he knows. That sometimes requires emptying the whole hamper and meticulous reorganizing.

Unfortunately, this behavior also controls the activity of placing the clothes in the washing machine, in the dryer, and moving the clean clothes back into the hamper.

Although Robert separates white clothes from the dark ones (except, that is, his dad’s socks) he still maintains a proper sequence with white and a proper sequence with dark. I haven’t decipher the general rule governing that activity but I know that all too often Robert searches carefully for the proper item to go next to the laundry machine. That, of course, extends the time of the laundry ten fold and makes process of washing clothe extremely complex.

Very often, I do the laundry when Robert is not at home. It is much simpler and quicker. I refrain, however, from placing Robert’s clothes in the drawers as he never accepts my haphazard approach to his shirts or his underwear. Yes, there are separate drawers for his underwear, pyjamas, pants (he doesn’t want to hang them), and his shirts. Still, only Robert know which shirt should be at the bottom of a pile and which one on top. So he Robert takes them out and corrects my errors.

I have tried many times to persuade Robert that it doesn’t matter which way you drop dirty garment into the hamper or in which order the clothes enter the washing machine. They would get mixed up any way. But I do it in vain because when Robert discovered that order is important in some situations, he decided that order is important ALWAYS.

We drove to New York, Philadelphia and Washington D.C. we spent four nights out of the house. Huge improvement comparing to the two night long trip to New Hampshire in July. During the second evening of that excursion, Robert kept repeating, “Home, home, home.” We were too tired to drive, so we stayed despite Robert insistence on return. Around 11 PM, Robert finally fell asleep with words “Home, home, home.” on his lips. His persistence drained our energy so the following morning instead of going to Lincoln Woods, as we had planned, we aimed for home.

Nothing similar happen during our Washington trip. Robert was mostly happy in Smithsonian Museum of Natural History, in the Flight and Space Museum. He liked (with the exception of a few minutes long confusion) our evening walks toward White House or around Washington Memorial. He seemed as flexible as he used to be during our longer trips to, from, and across California.

Most importantly, he didn’t mind that we separated. He went with his dad to the Flight and Space Museum while Amanda and I visited National Gallery. The trick was to just tell him ahead of time of that plan. Then he didn’t mind separating. This leads me to the conclusion that when we don’t explain him what is going to happen, Robert might consider any separation to be an equivalent of loosing members of his family (or his group) and thus reacts with increased anxiety.

Just the previous day, we didn’t do that. Amanda and I decided to take a different path to the hotel so we could stop at CVS on the way. We mentioned that to Robert but in a way that he couldn’t really process. It was the last-minute decision made hastily in the middle of the path. Moreover, we hesitated. Our hesitation became a clear indication that something was wrong. So he took his dad’s hand and continued on 16th Street while Amanda and I already aimed for 15th. Then he stopped and screamed again noticing that Amanda and I don’t follow them. On one hand, he felt the compulsion to follow the same path we took on the way to White House just backwards, on the other, he wanted us to stay together. Dilemma. Robert hates dilemmas. He hates being confused as the confusion is the indication that something is definitely wrong with the world. Robert didn’t know didn’t know He took a few steps one way and a few steps the other way. He stopped. He screamed some more. He pulled his dad along 16th Street only to stop again and turn back to join Amanda and me.

As soon, however, as he made that decision, his anxiety evaporated and calmly if not happily he walked with us all the way to the hotel.